Sunday, April 28, 2013

A force to be reckoned with

Sorry to have left all you blog readers hanging.  I've taken my normal road of denial and avoidance in the hopes that if I don't think about cancer, treatments, the "d" word or anything else attributed to Lisa's health then nothing will happen and life will remain status quo.

Hahahahahahahahaha.  It has been 10 days since Lisa was released from hospital.  While I've been avoiding reality, Mike has been posting tidbits on FaceBook and keeping a positive outlook.  My teenagers have been continuing to live life.  I, meanwhile, have been vacillating between screaming at God, throwing in the towel, madly searching the Internet for answers, and just pulling the covers up over my head and hiding from the world.

The past ten days have been comprised mostly of pain meds and sleep for Lisa with a few transfusions at the hospital, some short outings to parties, church and McDonald's trip rounding out the time.  She averages about 2 hours of awake time a day.  Her counts have been low so no treatment has been pursued and the solution has been to up the pain meds which I think makes her sleep more.

While I would never deny Lisa comfort or allow her to be in pain, I am struggling with accepting that our only option right now is to keep upping the dosage on her pain medications.   I struggle because I really believe that her "every third week chemo" is key to keeping her cancer and pain at bay.  She would get chemo and for two weeks after require little break-thru pain medication.  As the third week would go by, her need for pain meds would increase, but the next cycle of chemo in the fourth week would bring everything back to her "normal".  I struggle because this approach of just giving her pain meds makes me feel like we are really not giving her a fighting chance.  For every day that goes by, every pain med she takes, and every hour that she is now sleeping I just visualize that cancer growing and entangling itself in more and more parts of her body. Rooting itself so firmly that by the time we come up with a possible protocol to try it will be too late.  There will not be any way to tackle all the areas that neuroblastoma has claimed.

I struggle watching her sleep most of her day away only waking at most for an hour at a time once or twice a day.  I struggle with wondering how long she can hang on, how long we can all rally, how in this day and age with all our science and technology there is not a better answer than "more" pain meds.  I struggle with figuring out how much I should continue to fight and look for answers.  I struggle with being told this is the end.

I struggle because I've never been one to follow the popular vote or go with the "in"crowd. Telling me something can't be done only makes me want to prove it can.  So, with that, I try to infuse sheer willpower (ok stubborness) into Lisa with the hopes she can prove doctors and science wrong...again.

Honestly, I don't know whom I kidding...Lisa is a force of her own. A force that pops out of bed one day last week and goes for a few hours to her friend's birthday party, a force that sleeps most of the day except for lunch hour when she convinces her caretaker that a trip to McDonald's is what she needs, a force that sleeps thru church but then wants to go to a restaurant for breakfast. A force that given a little help from her friend chemo will show cancer that she is a force to be reckoned with.

As I said at the beginning of this post...I'm in denial, I'm in avoidance mode and I'm struggling.  But, I am still looking, hoping and believing.  My kids know that I am a "mommy lion" and that I have their back and will protect them in any way I know how.  Lisa knows it too, and when she told me this morning in her sleepy voice that she wants to live, that she wants to beat cancer, she knew mommy lion would pounce....and I did, I've hit up the internet, sent out a few inquiries to some doctors about possible next steps, and I've updated the blog, and I continue to rack my brain for what else I can do as I sit as close as possible to Lisa while she sleeps. 

 Please continue to pray and live life fully.


Prayers for the children of God said...

Dearest Lisa and Family:
We are praying extra hard for you. I don't know how to search to find cllinical trials but I would if that would free up your time. Perhaps Europe is more advanced? (just grasping at any option) Of course we NEED Lisa to live. I hate, Hate, HATE cancer! In the Fathers name, All Saints in Heaven, please Dear Lord give Lisa her miracle. Amen. Sandy

Anonymous said...

Love you sis! You are so strong beyond any words. Lisa and the teens have learned to be strong from you. I know your mama lion instincts will guide you. Remember your lion pride is here to support you in whatever way you want us to whether we are silently rooting for our leader, or if you need us to jump more actively into the fight, or whether you need us to be the strength for you if you choose to rest. It was nice seeing you and Lisa even if just for a brief time yesterday. Every moment with Lisa re-fuels my heart as each moment with you gives me courage and wanting more to fight the good fight. ~Sam

Anonymous said...

I want so badly to see Lisa playing in the backyard. The world won't feel right until then. I'm praying.
Love, Debbie

Janet johnston said...

Dear Linda, I read your post and I think you are the strongest woman I know! No mother or father should have to go through what you have gone through. I am praying for you and if you need anything, you know how to reach me.
Love Janet

Lynn Zott said...

Sending loving, healing energy to all. I wish I could do more, and will, gladly, if I can. Just say the word. xoxo